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Eventually, she was diagnosed with Neurofibromatosis type 1, a genetic disorder characterised by non-cancerous tumours and changes in skin pigmentation.
After years of living with the rare skin disease Sandra shares how, through the rejection, pain, and uncertainty, she finally learnt to love herself:
“I have a very rare skin disease called Neurofibromatosis. My skin is littered with bumps (neurofibromas) and birthmarks (café-au-lait spots).
When I was five years old, my mother noticed a mark just below my buttocks, it was pimple-like, and soon afterwards I got a birthmark on my arm which was a coffee colour.
This was alarming to my mom because she had no idea what was wrong with my skin. We started seeing specialists, homeopaths and doctors, but no one could tell my mom what was wrong with me.
Doctors said things like I should stay out the sun, stop eating dairy and wheat products, the climate played a role… the list goes on and on. With no answers to what was happening, these marks continued to grow and more and more of them appeared on my skin.
I hated how I looked.
In primary school I only had one friend, I had a stutter and I was a shy, quiet girl but high school was the real nightmare.
Children made fun of how I looked, I was called names, pointed at and even called a freak of nature.
I was at home more than at school. I purposely made myself sick.
I remember once I had a neurofibroma by my bra strap, out of pure frustration and disgust I took a pair of scissors and cut it -- I felt no pain.
Towards the end of grade eight I finally found out what the marks on my skin were.
I fell sick, I could couldn't get rid of the flu, my mother’s friend suggested I see her GP, her GP was in Benoni, while busy with the consultation, I asked him what were these marks, I will never forget his words, "My dear, you have Neurofibromatosis”.
He explained to me what it was and he showed me pictures. It felt as if the ground had sucked me in, my world came to an end.
It’s every girl’s dream to be beautiful and not be the odd one out, the funny looking girl, the monster.
After Grade 8, my parents decided it was time to change schools, I attended a school called Protea for children with learning disabilities.
There, I was accepted for who I was, I made friends and even had a boyfriend, I enjoyed life again.
I met my boyfriend when I was 16 and he treated me like gold. He suffered from epilepsy.
His mom said I should be on contraceptives and I went to see a doctor to get a prescription. But the doctor then told me my condition meant that if I fall pregnant, I probably wouldn’t be able to carry a baby to full term, or that my child would be brain damaged if I did.
My heart was broken because I had such a love for children.
Our relationship didn't last long because he completed matric and moved on.
After my Grade 11 year, I left school and decided to study further for event co-ordinating. I met someone soon afterwards and fell pregnant.
My parents were not happy and I was scared, but knowing this might be the only chance I get to have a child, I went forward with the pregnancy but her father left when I was three months pregnant.
On 18 October 2007, I held my perfect, screaming daughter for the first time. Ten toes and 10 fingers, perfect in every way possible - and she had no funny marks on her little body.
When it comes to my Neurofibromatosis, I don't suffer from much pain. I do get a shooting pain in my back every now and then, and sometimes in my lower back where my legs get pins and needles, but it does not last very long. I also get pounding headaches where it feels as if my whole world is shaking or get blurry vision – but that passes too.
I'm healthy and blessed with a great family, a beautiful daughter and a great friend who is always there for me.
Although this is said to be a genetic disease no one in my family has it. My brother has scoliosis, which is the curvature of the spine.
My life has not been easy. Yes, I hate how I look, but there are others worse off than what I am, some lose their sight, hearing and have tumours on the brain, spine and suffer from pain.
I was teaching Grade R last year, when children asked me what it was, I explained to them, when they asked why, I said it is because God made me extra special and he has a big plan for me.
I allowed children to examine them and ask questions because knowledge is power.
It was then that one of the girls told me: “Teacher don't worry, one day when I'm big I'm going to be a doctor and I’ll take it all away.”
This story was submitted to YOU and has been minimally edited. Do you have a story to share? Email yours to Pam.Magwaza@you.co.za
